Building a community of Practise for People with Profound and Multiple Learning Disabilities

WWNT are please to republish this blog entry from 1000Lives

On January 27th 2015 in Cardiff, a group of clinicians from health and local authority will be hosting a Community of Practise around services for people with Profound and Multiple Leaning Disabilities (PMLD). Helen Thomas, Lead Occupational Therapist at Aneurin Bevan University Health Board blogs here about she would love you to join and explore the issues across Wales for people with PMLD and their carers, creating a groundswell of opinion around good practise and service provision. Book your place here.

A good starting point would be perhaps to outline the matter in hand and list the characteristics, needs and disabilities that make up the population of people with PMLD – which would include having a profound learning disability, needing high levels of support, great difficulty communicating and so on. A therapist might reference the complexity and the range of health, social and third sector services locally and across Wales and then talk about the sheer frustration and drudgery of trying to get funding for equipment, lack of accessible facilities and high levels of skilled support required. Local authority staff may stress the importance of providing personal support and care, but recognise the lack of opportunity for exploring person centred activity and choices. Talk to a carer/parent and they would likely say about the daily grind of poor access to specialist equipment and therapies, lack of cohesion between services, delays and waiting for assessment and provision, and the footfall over their thresholds of a range of professionals that vary and change at a scary rate.

All of that and more would be true. But parent’s, carers would also share the humour, responsiveness and love they have for and from that person; they would recognise the spiritual, feeling, sensual being at the heart of the condition. Many staff and others would recognise that also and would want better planning and joined up services to allow engagement with the whole person rather than the condition. Mencap has provided several excellent guidelines and films available online at www.mencap.org.uk which place the person with PMLD at the centre of engagement and service planning, and highlights possibilities and potential in services.

Perhaps part of the community of practise, will consider the range of services and agencies and what we need to do to improve joined up working, and the political drive needed to support that. Perhaps we would be radical and consider how we place the person with PMLD at the heart of service planning by including them in the personalisation agenda as part of co-production.

To misquote ‘Field of Dreams’ (great film – very 1980’s) “If you build it they will come”. In this case on our journey rather than supernatural help we have Public Health Wales, and rather than attracting people to a homemade baseball pitch in the middle of Iowa we hope you may feel compelled to join us at the Swalec Stadium on the 27th January to network and explore the nature of these issues and the Community of Practise further. If you’re interested in joining this event, click here for more information.

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